Special Events Stories & Photos

May 19, 2007Oklahoma City Flying for a Cure Kite Festival

Children’s PH Awareness Book Inspires Flying for a Cure Kite Festival

Duana Newcombreads Caleb's Kite

Oklahoma City Support Group Leader Duana Newcomb is the mother of PH patient and group co-leader, Katie Hill. To help explain PH in simple language that Katie’s children would understand, Duana wrote a children’s book called Caleb’s Kite (unpublished). The book uses a kite as a symbol of the lungs to show how they are affected by high pressure. So when the Oklahoma City PH Support Group decided it wanted to organize an event to raise funds and awareness for PH, they used Duana’s awareness book as inspiration and chose to do a kite festival.

The Oklahoma City Flying for a Cure Kite Festival, held on May 19, was a high flying success. Around 150 participants from the PH community in the Oklahoma City metro area were treated to a moon bounce, belly dancers, square dancers, clowns, parent-child 3 legged races, silent auction, EMSA ambulance, sponsor booths and door prizes. The main event, while it didn’t include actual kite flying due to safety concerns, was just as fun with a kite demonstration and scavenger hunt. The festival grossed $3600, the proceeds of which will go to PHA and PH research.

The square dancers had so much fun, and were so inspired, they will be holding a benefit dance to raise money for PH in August. Duana says, “There are a lot of square dancers in this here neck of the woods, and they are very generous and loving people. We are excited about this upcoming event.”

Tammie belly dances "I have PH. It's incurable and it isn't going away. I won't wake up one day and it is gone. PH doesn't control my life. I control my PH so I CAN LIVE LIFE!!!"

klahoma City Support Group Assistant Co-leader and PH patient Tammie Sharp used to be a belly dancer. She invited her old dance troupe to perform at the festival. Tammie says, “I was thrilled to be able to join my dance troupe once again for the performance. It was so cold I had to wear pants, but I still danced!” Tammie declared that the most important part of the event though was raising awareness about PH.

don't be a square... be a square dancer

Duana agreed and added, “The most meaningful part of this event for me was seeing Tammie and Katie come alive with the prospect of actually doing something about PH. They are both so young and have expressed so much frustration and helplessness with this disease. It was incredible to see them working out every detail while instilling some hope and ‘usefulness’ in their lives.”

The group plans to hold another kite festival next year, but with actual kite flying. Tammie says that they learned the hard way that you need to ask a lot of questions of the event venue, and in their case make sure kite flying is allowed. Power lines at the park this year made kite flying too dangerous. She also learned that she “can do this – and in a short amount of time.”

Duana, Katie and Tammie would like to thank all of the support group patients, family and friends who helped make the festival such a success. The group would also like to thank festival sponsors Accredo Therapeutics, Encysive, Gilead Sciences and United Therapeutics.

Billy McKaye Belly Dancers belly dancing for PH

Amanda Baffiel singing I'm a Survivor for those past, present, and future of PH. This is the Oklahoma PH Support Group's song.

"the hangout"

PH Story by Tammie Sharp in honor of Tina Welsh and in memory of Leona Coate, Rhonda Carpenter, and Robert Fulwider

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.